Happy Birthday Brody!

The day we have waited for and prayed over for so long finally came. It seemed like such an accomplishment and victory to watch Brody celebrate his first birthday surrounded by so many family and friends, and boy did we celebrate. We started off with Brody's birthday party. We had a sports themed party and invited almost everyone we knew. We have had so many people walking this journey with us and I felt like this was a day for all of us to celebrate. The saying "it takes a village to raise a child," was so true for us, so I had to invite our village. Brody was passed around from person to person while I just got to sit back, relax and take it all in.

 

 We are good with the singing, just don't clap!

 I have waited all year to take this picture...

 

 and you can see it took some practice! :)

On Tuesday, we celebrated his actual birthday. We had a small dinner at my parents' house and ate more cake!

And we sing again, no clapping!

 

 

That Saturday we celebrated another anniversary, heart surgery. A lot of heart babies have a celebration for their heart day and I truly felt this was something worth celebrating. This was a day where I really got to take a step back and see exactly how far we have come. We had a really rough journey in the beginning, but I know that I would not be the mom, or wife, I am today had I not gone through that experience.

 

As a heart mom, I have learned the power and importance of family and friends. There is no way we would have made it through this last year without the support system we have had. From car rides, to meals, to hotel rooms, to visits, to listening, to crying, to praying, I relied so heavily on everyone. Sometimes it was me needing to be strong for others and convincing others that everything was okay that made a difference.

 

As a heart mom, I have learned the power of prayer. I would say really as a mom in general. We struggled so long just to get pregnant and I could never figure out why God was giving me that struggle. Looking back, I think He was preparing me for motherhood. Had I not of gone through that struggle, I may not have been strong enough for the experiences this last year has brought.

 

As I heart mom, I have learned about the impact of strangers. So many people that I have never met have connected to our story and followed Brody from the very beginning. I love when I hear about people I don't even know asking how Brody is doing. My absolute favorite is when I get introduced to someone new as, "this is Brody's mom." Brody has no idea the amount of people who have thought and prayed about him. Through the power of social media, I have been able to connect with other heart moms. This has been a true blessing. It is an entirely different form of support from people who are living a very similar story. I know that I have benefited greatly from the support of these other moms and I only hope that I can use my story to help guide and comfort other heart moms.

 

As a heart mom, I have learned that everything is worth celebrating. Brody can do the slightest of things and I am jumping up and down getting excited. I know this is probably true of most moms, but I feel like a heart mom has a little extra to celebrate. I would also like to add that Brody accomplished his goal I set for him and he is now sitting up on his own!

 

 

 

 







  Some people never meet their superhero;

I gave birth to mine

 Love the face

 

 

We have so much to look forward to with this little guy. Oh,  I can't wait to see the places he will go!

 

 

 



 

 

 

 

 

 





 







11 Months

Well other than a million and one different appointments, Brody is doing great. We stay very busy with his 4 different therapies. He still does not like going to therapy and typically will cry the whole time. I am in the process of switching his therapy over to "in home" therapy where a therapist will come work with him at home. I tried initially setting his therapy up this way, but had no success. My second attempt has worked out better and it's just a long process getting everything switched over and scheduled. My hope is that by switiching over to "in home" Brody might be a little more comfortable in a familiar setting and we might get a little more accomplished. Also, these therapist will be able to go to a baby sitters house, so I am also in the process of looking at going back to work. It's so bitter sweet to think about going back to work, but when you look at the big picture, I think it will be best for all of us. We are trying to get him more comfortable with being in different settings with different people to help with the adjustment of going to a baby sitter. I have noticed that he is getting better and better ad being able to adjust to different circumstances. 

We had our cardio appointment this last week and overall things looked good. The cardiologist noticed some changes on his echo and said these were things we just needed to watch and keep in mind for the future. His tricuspid valve that has always been leaky and has not been fixed yet is now measuring "severely" leaky. His new aortic valve that was placed during his last surgery is dilated. This is pretty common and not unexpected and the cardiologist hopes to manage both of these issues with his medicine. We will continue to monitor him for signs that he is not tolerating his heart situations and hpoefully we can still go a very long time before needing to surgically repair anything.  As she was telling me all this, my heart was sinking. I am not even a little bit ready to think about another surgery. My very conservative cardiologist did not seem overly worried by these changes and felt good enough to let us go 3 months until our next appointment. When she said that, I think I took a big breathe of relief. 

We have a couple of appointments coming up that will hopefully give us good news. Brody will have blood work done to check his immune system and see if his T-Cell count has improved. Hopefully everything will come back showing imrpovements and we can maybe come off some of our meds. He will then meet with infectious disease that monitors his CMV virus. If his blood work shows his immune system has improved he will get to come off his CMV medicince. This would also mean one less monthly appointment and blood work. This medicine can have some negative side effects on blood count and the liver, so he is needing to be monitored for any symptoms. At some point, if I can ever get everything figured out and coordinated, Brody will meet with a nutritionist to evaluate his feeds. He has fought hard to work his way into the 26th percentile and he has been on the same feeding regimen for a very long time, so we want to go over things and see if and what kind of adjustments we might need to make. 

This last weekend we celebrated Trey's first Father's Day. It was a nice day of just relaxing and spending time together. So often we are on the run and constantly going, going, going and it was nice for the three of us to get to sit around and be lazy. Trey does so much for Brody and I so we treated him with a gift of golfing fun. 

By the time we are ready for another post Brody will be one! I am so excited for his birthday and party. There is so much to celebrate! 

                                 11 months

         When we are tired of practicing sitting up

    Mission Accomplished. I put him in his jumper so 

    he would tire himself out and take an early nap 

    to be in a better mood for therapy. 

   Looking good in Michigan colors (hubby is a huge 

   Ohio State fan and wasn't amused with my 

   comment ;) 

    Cardiologist was running behind, so we got to eat, rest and watch 

    some Mickey Mouse Clubhouse

 

    Happy Father's Day!

10 Months

I guess the old saying, "No news, is good news,"  holds true. The big picture is that everything is going really well. We had our cardio appointment in April and we don't have to go back for 2 months. That is the longest we have ever been able to go. We started occupational therapy a couple of weeks ago and we are still getting adjusted. The first two visits Brody screamed the entire time and we didn't get anything accomplished. Our last visit was more of a success. He was in a decent mood going into the appointment and made it about half way through before getting upset. Even though he was upset, he was still cooperating and we were able to work through the crying fit. We had our first speech therapy this morning to work on his feeding issues. She was pretty pleased with his starting point and where we are right now which is encouraging. This week we will also start his physical therapy. In case you are lost, we have speech therapy on Mondays, physical therapy on Tuesday and occupational therapy on Wednesday and are awaiting the schedule for a developmental therapy. Talk about running out of time. Our other doctor appointments get squeezed in on Thursdays and Fridays right now, but because Brody is rocking it, we don't have too many of those.

A couple of weeks ago Brody had his first cold. We have been through a lot with surgeries and hospitalizations that you would think a little cold would be nothing for me to handle. The truth is it broke my heart. He handled it pretty well, but I had a hard time listening to him cough and breathe throughout the night. I was very happy when he was feeling better and was back to sleeping through the night.

I feel like everyday Brody is growing more and more. This month he accomplished rolling over and it came out of nowhere. We were doing our tummy time and all of a sudden he started rolling. Now it is difficult to keep him on his tummy for tummy time because as soon as you set him down, he flips. Our next goal is to be sitting up. We practice and try a lot, but we still have a ways to go. We still need to work on our upper body strength.

This last weekend I celebrated my first Mother's Day. This has been a difficult holiday for me for quite some time. For years it was the struggle to get pregnant and then last year there was the fear and anxiety over the pregnancy. This year was pure joy. This kid is my absolute world. I pour my heart and soul into everything I do for him and it's nice to have this one day to celebrate this relationship. I am so obsessed with him!

I am in the process of planning his first birthday party which is exciting. I can't believe it is almost time for that.

We take lots of selfies

The only thing better than being Brody's mom, is being batman's mom!

Selfie

He is starting to look so grown up

 

Here we roll!

 

 

Love making him laugh

 

We showed him the video of him laughing

 

9 Month Check-In

I absolutely can not believe that this kid is 9 months. Some days I feel like he was just born and others it feels like it's been forever. Brody is doing very well. We have been very busy keeping up with doctors appointments. Over the last 2 weeks, we have only had one day of no appointments. Everyone has been telling me that he is looking good and growing well. We are now in the 15 % for his weight and he is looking quite chunky (mainly because he isn't on the curve at all for his length). It's funny to be in a waiting room and people comment at how big he is. I laugh and say "We've been working really hard on that." His different specialists are happy with his progress. Here's a breakdown of his appointments recently. 

Cardiac Outcomes: They did an assessment for his development and it is no surprise that he is developementally behind, but we are working on getting him set up with his therapies and Trey and I feel like he is advancing more and more every day. 

General Surgery: I wanted them to look at his G-button to look at some redness. They gave me an ointment and it's been good. I found these cute little pads that go around the button that absorb some of the leakage to prevent skin irritation. 

Pediatrician: 9 month check up went well. He got a couple of booster shots and all seems to be well. We had to get some of his presecriptions switched over to 90 day supplies per the insurance. This has been somewhat of a headache, but once it is all set up should be smooth. 

Eye Dr: The developmental doctor wanted him to have his eyes checked because he really wasn't following the object she had and the CMV virus he had can be in the eyes and cause eye problems. Eye dr said his eyes looked really good and he didn't see any trace of the virus. Brody was following his light up toy just fine. I think Brody just didn't like the boring ring she was trying to use. 

Feeding Evaluation: We are in the process of getting him set up to work with someone on his feeding. We went for an evalauation with an occupational and speech therapist to see who could best help him with his needs. All in all, speech therapy is going to work on his feeds and a little with his communication and occupational therapy is going to work on some of his developmental delays. On a side note, at home Brody is doing a lot better with his baby food. He is willing to take more and we are having more sucessfully attempts than failed attempts. 

Back to the Pediatrician: During his feeding evaluation, the occupational therpaist noticed tightness in his neck and how he always had his head leaning. I always wrote this off as he just wasn't able to support his head yet, but they called in a physical therapist who said he had torticollis. They wanted me to take him to the pediatrician and get his PT orders revised, so they could start working with him sooner. (His PT evaluation was originally scheduled for May). His pediatrician changed the orders and that was that. She has been really good about helping us get everything set up. 

Allergy and Immunology: His immune system has not improved which means that there is probably something going on with that. Brody and I both had blood work done so that they could look at his genetics and try and figure out why he is having immune system issues. 

PT Evaluation: We met with the physicial therapist for her evaluation. She gave us some stretches to do at home and we will start going to her as well. She mainly will work with his Torticollis, but a lot of the stuff she does will also help with his development. 

We still have a few more appointments left. Urology wants to check his boy parts, Infectious Disease wants to check in on his CMV. His levels are at 0, but they want to keep him on the meds until allergy and immunology says his system is better. While on the meds they need to monitor him for side effects. Cardiology will do an echo and check his heart. They have noticed a slight change between the echo he had when he was released and the one he had last month, so they want to check again and see how things are looking. Our cardiologist didn't seem overly concerned last time, so hopefully things are still looking good. 

We stay very busy, but a lot of this should calm down. Most of these appointments we have had recently won't be every month, but once we get his therapies set up we are probably looking at three different appointments a week just for that. Luckily, I have been able to set those appointments up at West Campus which is a much easier drive. 

Mom and Brody Selfie

He is so cute when he sleeps. Sometimes we can't help but stare at him. I love when he looks like he is praying. We finally have him sleeping through the night which has been a huge blessing for Mommy! I bought a cooler pack for his overnight feeds, so I don't have to wake up and change them out. For the first time in a very long time, I have slept through the night. I never thought I would be so excited to get to sleep until 6!

I think he is going to be a blankie kid. He loves to have burp rags or blankets in his hands or by his face. 

It's early in the morning which means it is time to play! 

We go to check the mail in style 

The first time my friends and I were out together with all the kids. The most "normal" I have felt in a while.

Easter Bunny. He did so well. I was really nervous because he was really fussy that morning. He really doesn't care who holds him as long as someone is holding him even if that means it is a giant bunny. 

These two are so cute together. The big one really loves his cousin Brody. 

Home! False Alarm! Back Home!

It's been a while since I have been able to update everyone because honestly I feel like I haven't had a moment to sit down and think. While in the hospital, Trey and I made the decision to give Brody a G- Tube. This would replace his current NG feeding that was going through the nose and instead, surgicallly place one in his tummy. This is meant to be more long term and in the long run is safer and much easier to deal with. It was very obvious we weren't going to get anywhere with the bottle any time soon, so at this point it made the most sense. Before we left the hospital the first time, the idea of a G-tube was debaetd amongst the doctors, but Brody's heart surgeon did not want him going through another surgery the way his heart was. Now that his heart was much better, everyone was on board. It always sucks to have to go through another surgery, but compared to heart surgery, this was a breeze. The day of surgery we sat around and waited most of the day. They had a round-about time they were going to do the procedure, but had to wait for the OR to free up. Our heart surgeon insisted that this surgery take place in the Cardiac OR with a Cardiac anestesioligist just to be safe and nobody argued with that. Once again, I handed Brody over to be taken to the OR at about 3:45, by 5:15 we were talking with the surgeon. Everything went well. They wanted him to spend one night in ICU and the next day we were sent back down to the floor. 

We spent this next week slowly introducing his feeds again through his new G-Tube. His throwing up his feeds had stopped which was very exciting. On Saturday, we were released from the hospital and back home once again. 

Our week at home started off great. We were getting adjusted well and towards the middle of the week Brody started having very runny diapers and then started throwing up his feeds. By Saturday morning, he had thrown up his feeds every feeding since late Thursday night. We decided to take him in to the dr to be checked out, but we both knew what was likely going to happen. After leaving the pediatrician's office we headed downtown to Texas Childrens Emergency Room. I will say the one bonus to our situation is we never have to wait at the ER. We are always taken right away which is awesome because the waiting room down there can get crazy. After hanging in the ER for a while, we were admited, to try and figure out what was going on and to see if they could get him to tolerate his feeds again. Saturday afternoon they stopped his feeds and put him on IV fluids in order to give his bowles a rest. Sunday morning, we started introducing feeds again starting with some pedialite. He did well. No more issues throwing up and we were released from the hospital Monday afternoon. 

We are back home again and working on getting adjusted. He still is intermittenly throwing up his feeds, but it is not every feed. I changed the brand of forumla, but I don't think that did much good. I have no idea what is causing him to get sick. He is on a couple of antibiotics which could be the problem, but I am clueless on how to go about solving the mystery. He just has so many different things going on it's hard to pin down one thing. It's a bit frustrating, but I have gotten used to the smell of puke. He has a bunch of appointments coming up, so hopefully I can talk with some people and try and figure it out. We are starting to introduce and work on solids with Brody. He is all over the place with how he is doing with that. In the morning he does pretty well, but in the afternoon and evening it's hit or miss. He still wants nothing to do with the bottle and screams everytime you put it in his mouth, so we are focusing our attention on his solids. I am in the process of trying to set up his OT and PT services which should help us move along. 

I have been an emotional basketcase lately. Brody isn't sleeping great lately so I am exhausted. No surprise. I don't think you really plan on having a baby and getting great sleep, but it has been rough. I am really hoping we can get to a point soon where he will sleep through the night. On top of being exhausted, I have been really frustrated. The feeding stuff is incredibly stressfull and frustrating. I never know if what I am doing is good and I'm just tired of having to deal with it. When I dreamed of having a baby, none of this was in the plan. I get that not everything always goes as planned, but it's hard to grasp sometime. I feel like I accepted the heart issues and what that would mean for us, but I was not expecting the feeding issues. I was warned during pregnancy that it would be something they would have to work on with him, but because of his difficulty with recovery from the first surgery, everything took a completely different turn. I feel like my enitre life revolves around this pump. He gets fed every three hours sitll and because he has issues with throwing up, they run over an hour. That's a long time to be hooked up to a machine and to try and stay still. A lot of the time he will lay down and nap while his feeds are going which helps, but it sucks to be trying to navigate carrying your baby around while pushing an IV pole or carrying a feeding pump backpack. It is even more difficult to try and get outside the house. As soon as I start to feel bad about our situation, I start feeling incredibly guilty. I shouldn't be so upset because he has a good heart and is doing well. I know there are parents out there going through way worse and would do anything to just have to deal with feeding issues at this point. I try and remind myself of this when I start to get down and to focus on embracing the good that we have.  

Things overall are headed in the right direction. I am in the process of looking at returning to work next school year which is kinda exciting. As much normalcy that we can have the better. I am hoping by that time, our doctor appointments will have calmed down and he will be better adjusted to being home (eating better, sleeping better, moving along developmentally). At the end of the day, all that matters is that I have a happy, healthy baby boy. 

Kisses before G Tube surgery

Our newest sock monkey friend

New G Tube. In a couple of weeks, all of this will be replaced with a little button port that we attach a tube to during feeding. 

A little bored hanging in the hospital, but check out the view of both cheeks with no tubes!

Brody and Daddy's selfie

My nephew Tyler participated in Jump Rope for Heart in honor of his cousin Brody. So proud of this boy and how much he loves his cousin. 

 

Tyler showing off his mad jump rope skills

Play Time

Waiting for some grub in his new high chair

Fairfield opening day for baseball! We are "those" parents that put inappropriate shirts on their kid and think it's hilarious. 

8 months! Finally in the 5th percentile for weight (though we are still behind on our height)

From Blogger iPhone client

Better Recovery

Brody's recovery has been going well, but not without our hiccups. From a heart standpoint, Brody has a baeutiful heart. All the doctors are very pleased with how it looks and how it is functioning. Brody had an extended amount of time on his breathing tube. They did trials here and there to see how he would tolerate breathing completely on his own and we went back and forth and after about a week, we were able to take it out. He stayed on oxygen a few more days, and now he is clear on a respiratory stand point as well. 

Brody has contracted 2 different viruses. The first one is known as CMV and he apparently contracted this before surgery. We spent that one night in the hospital at the begining of January where they did a complete work up and this came back positive from that blood work. They said most people have CMV and don't even know it. If you were to go to the doctor they would just say you have a cold and you would never be tested for it. He was only tested because he was in the hospital and already had a compromised immune system. He gets IV meds twice a day for this and they check his blood weekely to determine when they can switch him to oral meds. While in the hospital, he somehow contracted RSV. Apparently the vaccine he gets every month to protect him against it was not effective. They said a lot of the time vaccines aren't as effective in kids with weakened immune systems. Because he has this he is on contact precautions. While in ICU we had our own private room (with a tv) which made ICU life a little easier. Whenever nurses or doctors come in to mess with him they have to wear disposable gowns and gloves. He isn't on any kind of meds for this, they just let it run its course and manage side effects. The good thing about both of these viruses is that he hasn't had any complications or side effects from these. If you didn't know he had it, you wouldn't be able to tell.

After 2 weeks in ICU, we made it to the floor! This is way better than the 10 weeks we spent in ICU last time. Our biggest struggles are our meds and feeds. Before going home we are trying to get him off some meds he doesn't need anymore and trying to work on our feeding. Eating has always been a struggle and it really isn't going that well. Brody will barely take a pacifier most days which is very different than pre-surgery. We started working with his occupational therapsit and we can't get him to take anything by mouth. At this point, we are able to rule out his heart as being the issue behind the feeding issues. We started him on some solids and he has done awesome with that. The doctor says he may just be one of those kids that goes straight to solids and sippy cups and never take a bottle. Sounds good, but the problem is we are still a ways away from that point. In addition to not eating, he is having some serious reflux issues. After or during almost all feeds he is spitting up quite heavily. It really breaks my heart to see him going through thatThere are still decisions to be made and hopefully we can figure out everything soon so we can get home. 

On a different note, February 7-14th is CHD (Congenital Heart Defect) Awareness Week. In the time I have spent at the hospital and talking to people a large number of people never knew their baby had an issue until something went wrong. The fact is 1 in 100 babies are born with a CHD. That is a crazy statistic because you think you would here more about it, but you don't. In utero, at about 20 weeks the heart is developed enough to check for defects. The biggest thing they will check for is to see if it has 4 chambers. When I was pregnant they said if you can see all 4 chambers, you can rule out a number of very serious heart defects. After delivery, they can do a very simple test to check for heart issues called a pulse oximeter screening. They put this little probe on the bottom of the foot or hand and check to see how much oxygen is in the blood. If there isn't enough oxygen, this can point to a possible heart defect and can lead them to ask for further testing. It really is quite simple. The state of Texas passed a law last year requiring hopsitals to perform this test on all newborns and soon this should be implamented state wide. Be proactive and ask about the heart during ultrasounds, and ask for the pulse ox screening once the baby is born.